Dementia

Meaningful Matters

Beverly Changethelens, Community, Dementia, Life, Senior health, Work

I used to want to change the world, now I just want the world to change. The difference is significant, I think – less pressure on me, for one thing! But more that there are so many people who want the same thing. When it comes to the way we care for older adults, I believe the change has already begun, thanks to companies like Meaningful Care Matters where I work as Associate Consultant. I also believe that the concepts we are teaching can be applied on a broader spectrum, especially in leadership.

At Meaningful Care Matters, we have a team of consultants who teach the Butterfly Approach™ to person-centred care in care settings (i.e. long-term care homes) around the world. A favourite (read: cheeky) way I describe what I do is simply that I teach people to be nice to other people. In reality, it’s actually more that we teach already nice people transformative ways to care for each individual (generally older adults, but not always) who lives in their care home.

It almost sounds too fundamental and basic. How do you treat someone as an “individual” that could be any different than has always been done? Henry is Henry, a long-term care resident with a detailed plan of care that will tell you his diagnosis and course of treatment, as per regulatory requirements. Maria is Maria, a team member who was recently recognized as employee of the year, they even gave her flowers and a lovely hand-written note. How are Henry and Maria not being treated as individuals?

The answer can be found in the concept of “Meaningful Engagement”, one of the five types of care taught in the Butterfly Approach™. Meaningful Engagement is a type of Positive Care (positive = being kind and compassionate, providing choice, etc.) with the added element of connecting on a human level through the knowledge of a person’s life story, appropriate physical touch, facilitation of independent occupation, etc. Basically, connecting with the human being and making them feel valued and important.

In other words, Positive Care would be knowing and using Henry’s name. Meaningful Engagement is knowing Henry was named after his father who died in the war and never got to meet his only son. Really good Meaningful Engagement is knowing that Henry was raised by his mother and two older sisters and had to drop out of school at grade eight to help put food on the table so he might get a little belligerent in a care home setting if he doesn’t have something to occupy him, something that gives Henry a sense of purpose.

In leadership, Positive Care would be knowing that Maria has been a nurse for 20 years and loves helping people so much that she won employee of the year last year. Meaningful Engagement is knowing that, at the end of every shift, she goes home to take care of her own mother, who is a widow and has been fighting cancer. Really good Meaningful Engagement is helping Maria adjust her work schedule to accommodate the many doctors appointments she would like to attend with her mom, because Maria can’t miss work and also pay the mortgage.

For the past six months, I have had the uncommon and fortunate privilege of going into long-term care homes across the province to teach and/or audit teams working toward Meaningful Care Matters Accreditation. I’m still new in this work and have a lot to learn, but it seems to me that the teams who have the easiest time learning the Butterfly Approach™ have leaders who approach them the same way, as individuals with value and purpose. Having been in the workforce for enough years that I’m shocked to count, I can confidently say that I have the uncommon and fortunate privilege of having leaders who treat me as an individual with value and purpose. The difference is Meaningful Engagement. And it matters.

Feelings, nothing more than feelings

Beverly Changethelens, Community, Dementia, Friends, Home, Life, Quotes, Relationships, Senior health, Work


I ran into Jane in the hall today. As I was saying hello she told me she wanted to talk, so we sat down together in my office.

Jane has lived with us for just over a year. She is in her early 90s and is one of those women who is beautiful inside and out. She was married for 65 years, raised three children who now have grandchildren of their own.

Jane has dementia. You probably know by now that I find working for people living with dementia fascinating, and Jane is unique in that most people can’t really tell there is anything wrong. She can hold short social conversations, she is kind and welcoming to everyone around her. But her short-term memory has an expiry of mere moments, and that makes her very anxious.

Settling into conversation in my office, Jane was distraught when she told me that she couldn’t “remember anything” and she didn’t know what to do. We have had this conversation a dozen times or more since we met. Jane doesn’t remember, but I do, and I have delicately tested how to respond over time, so today I simply said “I know.”

“Why is this happening?” she asked. And, while dementia is NOT a normal part of aging, it is for Jane, so I responded “because you are getting older and your brain is, too.” I explained how, like her skin is drying and wrinkling, her brain is drying and wrinkling a little, too, making the signals harder to get where they need to be. (There is very little science in this, mind you, just a simplistic way of explaining what is happening.)

“What can I do to make it stop?” was her response.

“Nothing, Jane. And it’s okay. Your life is different now but it is still good. You are a beautiful, kind woman. You have a smile that lights up the room and people feel good when they are around you. That’s all you need to know.”

“Really?” she said with a sigh of relief, assured in the moment.

A few moments later she told me that she was really confused and asked why. I calmly repeated what I had said before as if it was new information (because, to Jane, it was new information).

“But what can I do?” she cried.

“Just keep living your life. Keep putting one foot in front of the other. You are doing okay. You get confused, but most of the things we do every day are instinctual and habitual. There is a whole team of caregivers here to help you, so there are a lot of things you don’t even need to remember. Just live your life and do things that make you smile, we will make sure you are okay and everything will be just fine.”

Please recognize that I believe in individualized care and wouldn’t generally approach someone I didn’t know as I now approach Jane. Although she has no recollection of ever being in my office, the fact is she has sat in the same chair and said the same words many times. I’ve learned from getting to know her and her family that the best thing I can do is calm her anxieties by allowing them to be expressed. I can hold her hand and let her tell me she doesn’t understand over and over until I help her accept, once again, that she is okay.

Maya Angelou told us that people might not remember what we say and do but they’ll remember how we made them feel. People like Jane don’t *remember* how we made them feel. But they still feel it. And, to me, that’s the most important part of all.

Lessons in dementia, and humanity

Beverly Changethelens, Community, Dementia, Life, Relationships, Senior health, Work

When I answered the knock on my office door yesterday morning, I was surprised to see Bill and Thi-Tam on the other side. Bill has been going into most of our third floor suites every day since he moved in last week, including Thi-Tam’s, because he is looking for help. Thi-Tam, a sweet Vietnamese lady who speaks very little English, brought him to me, I’m sure with the hope that I could help them both.

Bill has dementia. Not just getting confused and forgetting things from time to time, he almost resets within moments, so that anything you tell him or do for him is gone from his memory very quickly. He is a kind soul who must now look at the world as a very scary place.

Like I said, Bill was looking for help. He needed someone to help him get home because he didn’t know where he was and, what was even more upsetting, he couldn’t remember his address or how to get there. I asked Bill to sit with me for a minute and explained that he is living with us right now. I told him that his daughter had to go away for a little while and she asked if he could stay in our hotel so she could be sure that he ate well and had someone looking out for him when he feels confused like now. I pointed to my mask and explained that ordinarily his neighbours would come help out because they really care about him, but because of the pandemic people aren’t supposed to go into each other’s houses. And I told him we care about him too and are happy to to share our home with him. (Through interactions with me and other members of our team, I knew his arguments and could be proactive in my explanations.)

As Bill and I walked back to his room, he returned to asking why he couldn’t just go home so I hesitantly explained that sometimes his memory played tricks on him. He asked what I meant so I told him that only a few moments before he had told me he didn’t remember his address – then he stood tall and recited it completely, as if to prove me wrong. (What he actually proved was that the information is still in there, but having dementia means he isn’t able to access it very well anymore.) Again I explained the hotel scenario as I settled Bill back into his chair by the window. It only took a moment before he smiled and told me about all of the accidents and excitement that has been happening in our parking lot below. He told me it had been even worse months ago when there was snow on the ground. I tidied his room and poured him a glass of water as he thanked me for helping him and asked over and over if I would come back and visit. I promised that I would.

When the power went out later in the day, I was checking on the wellbeing of our residents on the third floor and found Bill walking toward Thi-Tam’s room again. I said something like “oops, sorry Bill, I think you have the wrong door” and led him back to his room, pointing at his name on the door sign. We went inside and he told me he had a real problem and needed my help. He told me that a man had come into his room and Bill had offered him money to help him get home, the man took $200 and left. Now Bill was upset that he couldn’t get home and the man had his money. I knew that Bill only had $40 in his wallet (he offered it to me to often during the first few days!), so I asked Bill to describe the man. At first he couldn’t remember but then said he was a little bit shorter than him, with a shirt similar to his and blue jeans like the ones he was wearing. “Of course,” I told Bill, “I know just who you’re talking about.” I said I was pretty sure that the man was downstairs looking for a ride for him and that Bill should stay in his room so the man could be sure to find him when it all got worked out. I had to get back to the power outage situation so I told Bill that I would go see what was taking the man so long, and he gladly let me go.

This is how things have gone over the week that he has been with us: Bill’s anxiety causing him to constantly seek reassurance and comfort; his family struggling with guilt and grief, and most likely a little relief, that they had to accept help when they weren’t able to overpower this awful disease; our residents torn between not wanting a stranger to invade their private space and wanting to help a man in distress; our staff struggling to care for someone who needs a different kind of care than they are used to; and me trying to determine the best course of action while seeking ways to learn and do better next time.

Even though our nurse was as proactive as possible by doing Bill’s initial intake assessment during the time that sundowning (a neurological phenomenon that affects more than half of people living with dementia) is most likely to occur, having a lovely stranger visit his home put him on his best behaviour. As I mentioned above, his challenges go beyond simple forgetfulness but his instinctual self is still in there. There was no way to know for sure before he came, but it is obvious now that our residence isn’t the best place for him; his care needs are more acute than we are able to manage properly. But where do we go from here? Sending him home again would just put the family’s distress back to square one, or worse if this experience caused them to stop asking for help. Bill needs continuous attention, but the list for long term care is several years long. We were advised that we could send him to the hospital so he could go on a crisis list to get into long term care faster, but the upheaval would only increase his anxiety. And if he goes into care they would most likely medically sedate him, when all he wants is comfort and all he really needs is calm.

Being relatively new to the area, I started asking around to see if there were any private memory care communities locally and was surprised to learn that most people didn’t even know what I was referring to, they had only heard of that type of care in a long term care facility. Eventually I learned that our sister community a couple of towns away offers memory care so I called to find out pricing and availability, and then called Bill’s daughter to explain the situation and offer the best solution I could find.

Bill leaves on Monday and, I have to say, I’m going to miss him. In only a week he has already taught me so much. Having recently studied about dementia, the time I spent with Bill really gave those lessons substance. I keep thinking about that much quoted theory that people don’t always remember what you did but they’ll always remember how you made them feel. I think that people who live with dementia might not remember how you made them feel, but the important part is that they will feel it. If you continuously approach with calm, they will feel calm. If you meet them where they are and suggest explanations for the things they don’t understand, they will feel calm. If you practise patience and therapeutic reasoning when they ask the same questions over and over; if, instead of arguing and telling them they are wrong, you go along with their narrative and provide comfort, they will feel calm. And with calm Bill will be able to have conversations and tell stories and laugh again, and he will be okay. He will be different, because his brain doesn’t work as it once did, but he will be okay. And that will have to be okay.

**Published with permission from Bill’s family**